Chronic Pulmonary Aspergillosis Annual Report 2018-19 Final

NHS National Commissioning Group - Highly Specialised Services Chronic Pulmonary Aspergillosis National Service The National Aspergillosis Centre Annual Report 2018-2019 A European Centre of Excellence in Medical Mycology Contents 1 General overview and highlights 2 Activity 3 Clinical service developments and personnel 4 NHS Mycology Reference Centre, Manchester 5 Clinical audits 6 Patient engagement 7 Research and key publication findings 8 Public awareness and educational outreach 9 Statutory reports 10 Antifungal expenditure 11 Future developments and direction Appendix 1 Categorisation of complexity (Banding) Appendix 2 Referral to appointment time audit - April 2018 – March 2019 Appendix 3 Heatmaps of patient referrals and existing patients Appendix 4 Quality of Life, MRC dyspnoea scores, weights and Aspergillus IgG - April 2018 – March 2019 Appendix 5 Publications from the Fungi@Manchester Group (2018) Appendix 6 Patient survey Q1 2019 Appendix 7 PR work – Raising awareness and supporting NAC and aspergillosis generally Previous NAC annual reports can be accessed here: https://aspergillosis.org/nac- reports/ Cover figure shows the asymptomatic progression of CPA over 3.5 years in a patient seen in secondary care, but without any new diagnosis being considered because of a lack of symptoms. On presentation her Aspergillus IgG antibody was >800 mg/L (normal <40). Page 2 of 52 1 General Overview and highlights This report covers the tenth full year of this National Aspergillosis Centre (NAC), commissioned as a Highly Specialised Service within the NHS. A total of 131 new patients with CPA (out of a total of 367 with some form of aspergillosis) were seen from April 2018 to March 2019. At the end of March 2018, 521 patients from England and Scotland were on service with an additional 22 patients from Wales, Northern Ireland and Isle of Man. In the year 65 patients died and 33 were discharged from service. This represents a 6.1% growth (15.3% growth in prior year). Waiting times were on average 8 weeks (9 weeks in 20117/18) with 11 patients waiting for up to 6 months due to illness or rescheduling of appointments. Twelve patients referred in 2018/19 died in the same year. Overall drug expenditure is similar to the previous year with a slight growth consistent with growth in patient numbers. Most oral voriconazole, posaconazole and isavuconazole is prescribed through Hospital at Home and delivered to patients’ homes. Admission and OPAT days for IV micafungin or liposomal amphotericin B therapy were similar, with a slight rise in the number treated at their local hospital and reimbursed by the NAC. Azole antifungal resistance is the primary reason for IV antifungal use. Posaconazole and isavuconazole was used in those intolerant or failing itraconazole and voriconazole as a trial of therapy. Posaconazole was successful in 15 of 36 (42%) and isavuconazole in 7 of 15 (47%) trialled, with outcomes pending on a further 10 patients. The NHS Mycology Reference Centre (MRCM), provides the high level diagnostic mycology service for the NAC and is now independently UKAS ISO/IEC 15189:2012 acccredited. The laboratory is the largest mycology laborarory in Europe with a strong performance in turnaround time, critical results reporting in 1 hour, external EQA, linked clinical audits, publications and national and international representation. The MRCM has been at the forefront of diagnostic developments for aspergillosis in the last 8 years, with pyrosequencing to determine azole resistance, high volume sputum culture the latest developments. Amongst the 71 papers and book chapters published in calendar year 2018 (see Appendix 5) (81 were published in 2017), there were several areas of direct relevance to patients with CPA and aspergillosis: 1) European guidelines for the diagnosis, prophylaxis and management of all forms of chronic and invasive aspergillosis, 2) Diagnosis recommendations of CPA in low and middle income countries, 3) A major audit of 200 patients with CPA from the NAC and their 12 month outcomes, 4) Summary of posaconazole for CPA, given as n-of-1 trials as per the NAC service specification, 5) A human genetic variant (ZNF77) allowing a high Aspergillus load in the airway, 6) Neutrophil defects allowing ABPA to develop, 7) Common occurrence of cystic fibrosis carrier status (10%) in ABPA. Patient support, educational and outreach activities continue to grow especially with social media use. A remarkable 100,000-130,000 individual computers accessed The Aspergillus Website and Patients’ website per month, 5,000 to 8,000 people daily, primarily from USA, UK, India, France and China. Live and recorded monthly online events held by the NAC are hosted within Facebook communities with >500 viewers each month. A Medical Alert card is available for patients. Public awareness efforts on aspergillosis continue as probably thousands remain undiagnosed. Page 3 of 52 2 Activity 2.1 Referrals, inpatient stays and caseload The total referrals, inpatient stays, procedures, death and caseload in 2018/19 (Table 1) were as follows: * The NCG fund patients from England and Scotland only # Appendix 1 shows the Banding criteria used Of the 367 new aspergillosis referrals from England and Scotland during the year 2018/19 (369 the prior year), 131 (35.7%) had CPA, a slightly increased proportion compared with prior years. Among the outpatient referrals, the mean time from referral to being seen was 8 weeks (Appendix 2), including 12 patients who rescheduled their appointments or were too unwell to attend which is reflected in their the long wait times of 4-6 months. There were 2 transitions from another form of aspergillosis into CPA, 10 patients whose diagnosis took weeks to confirm and 1 from the TB service. There were 3 admissions and 3 patients who were referred for an opinion first. Appendix 2 shows the area of residence, date of referral and date of appointment. These numbers include 1 referral from Northern Ireland, 3 from Scotland, 1 from Wales, 1 from Portugal and 1 from Greece. There were three direct admissions and one ward referral at Wythenshawe Hospital from another team. Overall 12 of 131 (9.2%) referred patients died within the year. The residence of each referral and all patients under review are shown in the heatmaps in Appendix 3. Many new patients with aspergillosis do not have CPA but are seen by the same medical and nursing team (Figure 1). These other forms of aspergillosis include allergic bronchopulmonary aspergillosis (ABPA), severe asthma with fungal sensitisation (SAFS), invasive aspergillosis, Aspergillus bronchitis, Aspergillus nodules and fungal rhinosinusitis, otitis, onychomycosis, building sickness syndrome and primary community acquired Aspergillus pneumonia. There has a modest rise in Band 1 numbers from 149 patients to 157 but a much greater rise in Band 2 patient numbers from 301 to 332 (see Banding criteria at Appendix 1). There was a slight rise in Band 3 from 23 to 29 patients. The principal reasons for these shifts are: substantial problems with antifungal resistance, concern about a high rate of resistance with itraconazole and earlier use of voriconazole in those with extensive disease and large aspergillomas. These shifts include 65 deaths (58 the previous year and 60 the year before that) and 33 discharges from service (26 the previous year). At the end of March 2019, 521 patients from England and Scotland were on service with an additional 18 patients from Wales, two from Northern Ireland and two from the Isle of Man. This Page 4 of 52 represents a 6.1% growth (15.3% growth in prior year). Three patients were presumptively cured with surgery and 13 underwent bronchial artery embolization (11 last year), some because of poorly controlled disease attributable to azole resistance. Figure 1. CPA patients on service at the end of each year from 2009/10 to 2018/19 with new aspergillosis referrals (2016-2019) and. Patient discharges and deaths per year are also shown. Admission days were slightly lower than the prior year at 694 (764 the prior year), but with many days of home IV therapy (OPAT) – 418 IV days. OPAT at other hospitals closer to home is not included in the figures, but is considerable. We also recommended admission locally and directly reimburse intravenous antifungal therapy for a number of patients who live a long way from Manchester. 2.2 OPAT for NAC The outpatient parenteral antimicrobial therapy (OPAT) team provides intravenous therapy for patients deemed suitable to receive their therapy in the community. During the financial year 2018-19 the following number of patients referred from the National Aspergillosis Centre were treated by the OPAT service: • 15 CPA patients in total • Bed days saved: 364 • All treated with IV Micafungin • 0 re-admissions to acute care Page 5 of 52 Figure 2. Number of admissions, bed days and OPAT days at Wythenshawe by year from 2014-15. 1000 Admissions 900 Bed days OPAT 800 700 600 500 Number 400 300 200 100 0 2014 - 15 2015 - 16 2016 - 17 2017 - 18 2018 - 19 Admission Data 3 Clinical service developments and personnel (Director Prof David Denning) The NAC has completed its tenth year of operations. The major shifts and improvements in practice and capacity are as follows: 3.1. Clinical and administrative personnel The following staff were appointed or redeployed to contribute to the NAC: Professor David Denning, Professor of Infectious Diseases in Global Health (3 clinical PAs) Dr Pippa Newton, Consultant in Infectious Diseases (6 PAs) (until February

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